In 2002, Sarah Johnson began running into problems at work that didn’t make sense. Her colleagues responded to her oddly, and she didn’t understand why.

Finally her boss called her in and told her people were uncomfortable

about the way she was staring at them. What was going on? Sarah was puzzled.

“I wouldn’t do that …” she began. “You’re doing it right now,” her boss told her. “You’re staring.”

Bewildered, Sarah felt as if her face was responding as it always had, with a smile, a look of concern, a blink. But none of it was coming through. All people saw was the owl-like stare that she later learned is called “the Parkinson’s mask.

Sarah Johnson with
her service dog, Chai

Photo by Ben Hicks

”It was just one of many trials Sarah faced as she moved toward a diagnosis of Parkinson’s, a disease which affects between 500,000 and 2 million people nationwide. Registries are now being set up to capture accurate numbers. Sarah estimates that Amador, Calaveras and Tuolumne counties each may have as many as 200 people with Parkinson’s disease.

As she tells her story, Sarah takes a piece of food off the plate and slips it to her service dog and constant companion, Chai, a sweet-natured 3-year-old Chinese crested hairless. She purchased Chai as a puppy, and then hired a trainer to “train both of us.”Smaller breeds are being used more frequently for people with balance problems, Sarah notes, because the tiny pets are more portable.

Chai’s 12-pound size doesn’t prevent him from baring his teeth ferociously if he believes someone might be a threat. He responds to hand signals, and helps Sarah in various ways, turning on lights (via specialized switches near the floor) and grabbing her cell phone (fitted with tiny ropes on either end) when it rings. People often want to pet him. “Please don’t,” Sarah says, “he’s working.”

Although tremors are the most familiar symptoms of Parkinson’s disease, not all people with Parkinson’s shake, says Sarah, founder and director of the “proACTIVE parkinsons project” serving patients in Amador and Calaveras counties, and some in Tuolumne County.Other symptoms can include shuffling, smaller handwriting, difficulty speaking or breathing, poor balance, excess saliva, unexplained sadness, difficulty sleeping and fatigue.

The project’s website lists 28 key indicators, many of which might be caused by other illnesses or disorders. Traditionally, Parkinson’s is thought to strike after age 60, but nearly 40 percent of newly diagnosed cases are in those from ages 20-50.

Sarah, 64 and a resident of the tiny Amador County community of Volcano, had Parkinson’s for at least six years before being officially diagnosed in 2004.

“I called three agencies for help. They all said ‘We’ll send something to you, honey.’ None of them did,” she remembers. “It’s hard enough to accept that you have an incurable disorder. I just wanted to go sit in the corner and wait to die.”

She began to cut herself off from others, and even gave up on hobbies until finally, “I got mad!” Then, she got active, with one goal in mind: She didn’t want others to suffer the frustrations she experienced trying to get help.

Sarah launched the project and Parkinson’s support groups in Amador and Calaveras counties. She made presentations to civic groups, clubs, and medical professionals, and for the past six years attended every health fair in both counties. She donated education materials to local libraries, and met with patients and families to offer support in person, by phone and online, and via the resource-rich website she created, proactiveparkinsons.org.

She put all of her business skills to work raising funds for her new cause. In her career years, she ran extended-care health facilities that ranged up to 350 beds. She was the first woman in national sales for a major liquor company, and later sold commercial real estate in Davis. In 2003, injuries sustained in an accident forced her into early retirement.

Over the years she’s found enough cash to sustain the project’s work and cover the costs of the thick packets of information she shares with those needing help. Amador and Calaveras community foundations, service groups, businesses and other donors have all provided help.

As her reputation has spread, people from across the country have called her for advice. She’s handled all this despite the fact that the Parkinson’s has slowed and impaired her muscles. Pain and other symptoms make everyday tasks a challenge, so that it takes her “10 times as long” to get anything done.

Sarah is frustrated at how little research was done on Parkinson’s until recent years.

“Parkinson’s is not a sexy disease,” she says in a voice cut almost to a whisper at times by the condition. “People who had it hid it.”

She lists Pope John Paul II, Katherine Hepburn, Janet Reno, Muhammad Ali and Michael J. Fox among those who concealed their Parkinson’s for years.

Bringing it out in the open has spurred both research and understanding. Michael J. Fox, since announcing he has Parkinson’s, has become widely known for his advocacy and quest for a cure.

“I feel that embryonic stem cell research is the only answer,” Sarah says, “and that’s what the Michael J. Fox Foundation and the Parkinson’s Institute are both pursuing.”

The disease was first formally described by British physician James Parkinson in 1817, but historians have found evidence of it dating back 7,000 years. In a healthy brain, key nerve cells produce the chemical dopamine, which signals the brain to produce smooth muscle movement. In a Parkinson’s patient, a high percentage of the dopamine-producing cells are damaged or dead. Without dopamine, cells fire wildly, leaving patients unable to control their movements.

Medication can slow the progress of Parkinson’s, but identifying Parkinson’s – as Sarah’s long road to diagnosis attests – can be difficult. Because early Parkinson’s can manifest in different ways, it can be difficult to put the pieces together. Sarah says a neurologist, ideally one specializing in movement disorders, is best equipped to diagnose the disease.

Dementia can be intertwined with Parkinson’s for some patients, but it is not a given.

“Depression is much more common,” Sarah explains. “The same part of the brain that is not making dopamine is not making enough of the mood-elevating drugs.”

She has seen patients diagnosed with Parkinson’s-related dementia “come totally alive” after taking medications such as Aricept, Namenda or Exelon – all used to help slow the progress of Alzheimer’s disease.

The proACTIVE project and Sarah are undergoing a major transition. Sarah is moving to Florida, both to be closer to family and to get away from the local winters that painfully aggravate her arthritis.

Sarah Johnson and Rosemary Wilson

Photo by Ben Hicks

Rosemary Wilson, Ph.D, 53, a research chemist, has been named acting director of the project and will oversee the transition with Sarah’s departure. Rosemary was diagnosed with Parkinson’s at 37.

Barbara Pollard, whose husband has Parkinson’s, will co-chair the Calaveras support group with Joe Fleishman, but admits the job will be tough. “I don’t think we can do anything close to what Sarah has done,” Pollard says.

The search is currently on for a new leader for the Amador group. For now, Sarah has placed Parkinson’s materials with Laurie Webb, a registered nurse, at the Amador County Senior Center in Jackson.

The Tuolumne County Parkinson’s group, which used to meet in Sonora, is now defunct. Sarah tried to bridge the gap for a period, often making the long trek from Volcano to help people in crisis, but the physical and financial toll became too great.

Does Sarah plan to continue her Parkinson’s work in Florida? “I hope not to join everything immediately,” she says. “I need a break.”

Those who know her don’t think that break will be long.

“For every little thing I do, I get the joy of being with wonderful people, people who are generous in spirit,” Sarah says. “We laugh together and cry together.”